5th Relay For Life

I've been wanting to share my Relay For Life experience for the past 2 weeks, but every time I sat down to write something about it I felt really emotional. With the kids home for the summer, I'm usually quite rushed anytime I am using my computer and I wanted to give this the time it deserves. 

This year's Relay was very emotional for me which surprised me. The first year was emotional and I expected that.  I wasn't even in remission yet and I remember feeling doubtful that I even belonged among the other survivors.  When I put my hand print on the banner with other survivors, I didn't really even have a time to write down as a survivor in remission, so I just counted back to my diagnosis. I remember feeling unsure of my place among the courageous survivors that I sat amongst on the field for the opening ceremony. Many of them had been through a much harder journey than I had.  They'd faced chemo.  Some of them had needed stem cell transplants and other procedures far more serious than what I went through.




But when I joined them for the survivor lap, I felt something that I didn't expect.  I felt empowered.  Walking seems like such a small thing, but it was and is one thing I could control.  I was able to band together with other survivors and show cancer that it can't knock me off my feet. The biggest thing that cancer took me from is my health and being able to walk a lap felt a little like thumbing my nose at cancer. Although I am in remission, I am not as healthy as I was pre-cancer. Losing my thyroid has turned a lifelong struggle with my weight into what sometime seems an impossible battle. The pounds that 2 years of hypothyroidism packed on have been such a difficult battle for me to take off.  Nevertheless, slowly I am winning that battle.

The fact that I am down almost 65 pounds since my last Relay made this year's walk more poignant for me.  It was a bigger "screw you" to cancer. Not only am I still standing and still alive but I'm taking off the weight that cancer helped me put on. It was much easier for me to walk that survivor lap and 2 laps that followed without even getting tired.  Progress! Physically this Relay was the easiest one for me.




It was very emotionally challenging for me though. It was the first time I cried during the survivor lap.  Seeing other people's tears always brings me to tears of my own. Seeing the luminaria that Abby and I decorated for my Dad choked me up.  I wish that my Dad was a survivor too.  I wish he could walk that lap with me. I hate that I'm here and he's not. This year was less about my battle and more about carrying on the battle in his memory. It's safe to say that my Dad wouldn't really have done Relay with me.  That wasn't his sort of thing. He never came when I was walking just for myself.  But last year and this year he was there....I carried him in my heart.






I am about to reach 5 years of being in remission on Wednesday July 13th. 5 years for a cancer patient is a huge milestone because the risk of recurrence becomes so much lower.  I realize that with thyroid cancer, recurrence at any time of my life is possible.  I know that the radiation therapy I had increases my risk of other cancers. But those risks are moving farther and farther to the back of my mind.

So as I reflect on the 5th year of my remission from Stage III papillary/follicular thyroid cancer, I am feeling thankful, blessed and hopeful.  I am thankful for my husband and children who have sustained me through this fight with love, patience and understanding.  They laughed along with me when I was so hypothyroid that all I could do was stare at my hand all day.  The sympathized with me through many a Low Iodine Diet. I am thankful for my friends and family who have been there to support me.  Those who have joined my Relay team and cheered me on each year as I do that survivor lap. Those who have been understanding when hypothyroidism drained me of energy to hang out or when I was filled with anxiety as I went through my testing. I feel blessed that I continue to win my fight against cancer.  I feel blessed that I have a wonderful competent doctor who cares for me and keeps me healthy.  I am blessed to have a good hospital with caring medical staff to give me a smile or a chuckle during testing or to add yet another bill to my monthly payment plan. I am hopeful that someday I will no longer worry about my cancer.  I feel hopeful that someday I will no longer touch the jagged scar on my neck as I worry about why I'm not feeling alright. I feel hopeful that some day there will be a cure for cancer.

Milestones

1 year ago today my beautiful niece was born. She has been such a blessing in all of our lives.  I'm so lucky to be her aunt.
5 years ago today I found out I had thyroid cancer. 

Some of the things I've learned since then:
*  I'm stronger than I thought I was.
*  You can't count on everyone you might have thought you could.
*  Some people will surprise you with how they will come through for you.
*  "It's cancer"....These two words can change your life.
*  It's a really good idea to make every effort to mend all of your bridges. This will give you more peace than you imagined.
*  Just because the cancer doesn't kill you doesn't mean you can ignore your health....other things might try to take you out instead if you do.

Apparently that "woohoo" was a little premature...

And the other shoe has dropped....sort of. I heard from my doctor yesterday about my blood test results and the next step in this great thyroid/lymph node adventure....and it's not the news I wanted. My thyroglobulin value is between 0 and .2.  I realize that I'm not going to hear a definitive "cancer free" and the best I can hope for is "undetectable". So that's a good result.

However, we are still not sure why my lymph nodes are huge.  So in March, I will repeat the neck ultrasound.  Depending on those results, I may have the thyrogen shots and thyroglobulin (TG) blood test again.

So the good news: my TG value is less than .2 and there won't be any cutting into my neck to get out lymph nodes right now.

The bad news: I had hoped this would be my last round of testing since I'm nearly 5 years out from my surgery and radioactive iodine therapy. At this point, I should be able to go off the yearly protocol. But instead I'm back to testing every 6 months. I feel disappointed, sad and somewhat angry. I want to move on with my life.  I have spent 5 years of my life worrying about cancer and I just want to be done. But I'm not done.  I'm still in limbo. It's still not settled.

I might glow, but my scan didn't

I had my radioactive iodine scan on Friday and before I could even get home, I got the call.  Nothing "lit up" on my scan meaning that there was no evidence of thyroid cells in my body.  WOOOHOOOO! 

Still waiting on thyroglobulin blood test results and a call from my doctor to discuss the next step with my lymph nodes that have been causing trouble.

Scan Week: Day 3

I got my radiation pill (radioactive iodine) today.  When I was going through my diagnosis, the nurse that gave me on of these pills said she referred to her patients as being "hotties" afterwards so I've always liked that...I'm a radiation hottie today! Unfortunately though I have been feeling the side effects since about an hour after I took the pill.  I have had a headache and tiredness all week (side effects from my thyrogen shots) but today I added feeling nauseous to that list. I didn't do very much today as a result which bums me out.  I wanted to finish painting my dresser.  But I slept most of the afternoon until it was time to pick my little girlie up from school.


Pics from today...









Tomorrow is my day off from the hospital for the week. Woohoo! Hopefully I will feel better and I can get that dresser done as well as the housework that I skipped today.

A very blustery day

Today has been such an odd weather day.  Very, very windy.  40 mph winds with 60 mph gusts (last I had heard anyway).  It has been sunny and stormy all at once.










Today was my 2nd Thyrogen injection. It went a lot easier for me today than yesterday. I got a little dizzy afterwards but the nurse I had moved through the whole thing much faster which I believe helped the level of panic I felt to be much less. Also I had my hubby with me for moral support (and in case I passed out) and that helped a lot.

When I got home from the hospital, I worked on painting this dresser for the rest of the afternoon. I need to pull out the drawers still and do the sides of them and the inside trim of the dresser. But the dresser and drawer faces already have 2 coats of paint on them, so I'd say I'm about 90% done. After this is completed, I just have some shelves to paint and then the transformation of our bedroom furniture from unfinished pine to black/brown will be complete.





On tomorrow's agenda: radioactive iodine.

LID: Day 14, Scan: Week Day 1

Today was my first day of "scan week" which meant I got to go to the hospital this morning for a Thyrogen injection.  Thyrogen will get me ready for the blood test I need to have on Friday that checks for a thyroglobulin level in my blood.  I'd forgotten how much the Thyrogen shots burn.  Ouch!

It was a really rough trip to the hospital for me this morning.  Since I have panic attacks, I had sort of expected that it would be hard for me.  I had no idea how bad it would be today.  After all, I knew what to expect because I have done this more times than I can count.  Thank goodness for my husband who came to my rescue with coffee & anti-anxiety meds.  I really hope that tomorrow is better.

LID: Day 11

I'm so blessed to have a sweet husband who is willing to stay up late making me muffins from the Thyca Low Iodine Diet Cookbook.  So this morning I have some yummy pumpkin cranberry muffins for breakfast (with low iodine dairy free spread) and some tea.  I'm so happy to have a break from peanut butter and bananas.

Trying to be brave

It's Low Iodine Diet, Day 10 and Day 1 out of 5 for the trips to the hospital for diagnostics. I wish I had something inspiring to say or some great LID diet tip to share but I don't. Today was just a blood test, but as usual I had a panic attack going to the hospital and another leaving it. It hit me like a ton of bricks that I am going through this...it's happening.

I am so thankful for the supportive comments people leave on Facebook.  Quite often, Josh and I feel alone in the cancer battle.  So those comments are really helpful!



My "I'm trying to be brave" face this morning...




My thyroid cancer survivor pin. I'm going to wear it every day that I have to go to the hospital. It's my good luck charm.

LID: Day 4

Today was day 4 of the low iodine diet.  I did my weekly weigh-in as well and found that I hit a milestone of 20 pounds lost.  I was really happy to see that. I am sure that the LID has something to do with hitting that goal faster than expected.  Especially after the past weekend where I ate whatever I wanted and I have not worked out this week at all.  By the way, I discovered over the weekend that not only do I not miss fried or fast food, but it grosses me out now. I did really miss pizza though!

The LID is making me feel icky. I feel tired, my stomach acid is out of control because of all the fruit and no dairy. When I log my calories I notice that my sugars are too high and my protein and fats are way too low.  This diet is definitely not a healthy one.

Breakfast: Homemade turkey sausage, pomegranate fruit bar, orange juice.

Lunch: Grilled chicken, grapes.

Dinner: Mexican corn (I cheated a little), fruit salad, Matzo cracker with unsalted, organic peanut butter.  I had such a taste for the Mexican corn and I knew it had some dairy on it and probably salt, but I thought a little taste of normal might keep sane.  So I had maybe a 1/4 cup of dairy altogether between the cream and cheese with the corn.

Snacks: fruit strip, grapes, raisins.

A week from today I will be getting my first blood test for the scan.  I'm trying so hard not to wish October away, but I'm happy about each milestone that I pass that brings me closer to this phase being over with.

LID: Day 3

So the best thing I can say about day 3 of the low iodine diet is that I made it through! I feel like with what I am allowed to eat that I wind up having a series of snacks rather than meals. My husband did go to Trader Joe's and got me 2 cool things last night: iodine free tortilla chips and iodine free bread.  The chips are pretty good because they have a lime flavor to them. The bread takes some getting used to. 

Yesterday was also rough because I spent too much time online.  I discovered two things...there is NOT enough online support for thyroid cancer patients & if you spend enough time online, you can really freak yourself out.  I am also wondering how necessary the low iodine diet is too after reading other people's experiences.  It seems that each patient's experience with LID depends on the physician.  Some people avoid seafood, some do nothing for a diet, and some do the strict LID like I am.

I don't have any cool camera phone photos of my tasty treats for you today, but here's what I had yesterday:

Breakfast: sugar-free kool aid,  homemade turkey sausage, banana, Archer Farms pomegranate fruit bar.

Lunch: Chapatti with grilled chicken, Coke Zero

Dinner: Iodine free tortilla chips with homemade pico de gallo, iodine free bread and organic unsalted peanut butter, sugar free kool-aid.

Snacks: Red grapes, Archer Farms fruit strips.

I know it's there, but I haven't found it yet...

"Challenges make life interesting, however, overcoming them is what makes life meaningful." - Mark Twain

I feel challenged right now. I feel challenged by life, cancer, grief, motherhood, marriage, friendship, family...all of it.  I feel like there must be a lesson in the challenges of the past few years, but I can't seem to see it.  I feel like I'm not learning the lesson and that is why the challenges keep coming because they are trying to teach me something. When I feel so overwhelmed as I do know, I like to sit back and try to evaluate what is going on.  What can I learn from this?

My Dad was one of the wisest men I knew.  He was my go-to-guy for advice.  Most of my life I thought it was my Dad's experience that made him wise, until one day (when I was 32 and he was 62) when I told him that I thought he was the smartest person I knew.  He chuckled and said that if he was wise it was because he "knew enough to know that he didn't know everything".  That really struck a chord with me.  I thought huh, maybe wisdom is knowing that you don't know all the lessons rather than how many lessons you know.

Cancer has taught me to look at things differently.  I don't wish away getting older anymore, I embrace it. Cancer has taught me that no matter how much you don't want to do something, sometimes you have to. Cancer has taught me that it can be cruel and take one of the people you love the very most away from you quickly. Cancer has taught me a lot of lessons and I thought I had a good grasp on all of them, but it apparently I'm not done learning.  This scare of the return of my cancer is happening to teach me something.  No matter what the outcome is here, there is a reason why this is happening. 

I wish that I could go to my Dad for advice, but I can't.  But I will remember that advice he gave me. I think I'm finally wise enough to know that I don't know what the lesson is.  I do know that cancer and I are going to not done being dance partners yet. But I feel fairly certain that as we spin around the dance floor, I will be learning some new moves.

LID: Day 2

I've made it through another day of the low iodine diet.  Woohoo!  Today's important lesson: salting the unsalted organic peanut butter with iodine free salt makes a big difference. I'm trying hard to be positive and see the little victories, but I have to be honest....

Ok, I'm already sick of fresh fruit.  And my stomach is tired of the extra acid.  I didn't even bother logging my calories today because I hardly ate anything.

Breakfast: Homemade turkey sausage from the LID cookbook, a banana, and some sugar free kool-aid. My husband is so awesome with cooking this stuff for me. I really appreciate it. The sausage was pretty good when it was fresh and not so great when it was reheated in the microwave.  Tomorrow I will be reheating it in a pan on the stove top instead.





Lunch: An Archer Farms pomegranate fruit bar and a chapatti flat bread along with Coke Zero Vanilla.

Dinner: Matzo crackers with organic unsalted peanut butter and red grapes.

Snack: Homemade popcorn with sodium free margarine and non iodized salt.

Last night, I also tried a baked apple (with brown sugar & cinnamon) from the LID cookbook. It was pretty yummy especially since I could add the margarine.

Low iodine diet (LID): Day 1

Today was the first day of my low iodine diet.  For those of you who aren't well versed in the whole thyroid cancer world, the low iodine diet or LID is necessary in preparation for radioactive iodine. I will be getting a small dose of radioactive iodine at the end of the month for scanning purposes so this diet is necessary for me. So why low iodine of all things?  Because our thyroid cells are the only ones in our body that uptake iodine.  The logic behind the LID diet is to starve the thyroid cells of iodine so that when the radioactive iodine is introduced into the body, those cells will suck it up like a sponge. For about 3 weeks, I will need to do this diet.  And it SUCKS!  If you want the full scoop on LID, please visit the Thyroid Cancer Survivor's Association  for more info.

The hardest part for me about LID is that I can't eat the foods that were a big part of my healthy eating plan such as turkey bacon and dairy. Fresh fruits and veggies are great, but they can get boring in a hurry for me.  The challenge for me is to make the fresh fruits and veggies interesting.  This is hard to do when so many key ingredients are on the "not allowed" list for LID.  We did hit Jewel today and found a butter substitute which makes life easier.  Fleischmann's margarine does not have any dairy or salt in it.  Woot!  I am also very lucky to have a supportive & empathetic husband who loves to cook.  He made me some Indian flatbreads that I can either eat plan or use as a sandwich wrap.  They are a little plain but beggars can't be choosers, right?

On today's LID menu was:
*bananas
*raisins
*homemade chappattis (those flatbreads)
*orange juice (which I normally don't drink because of the calories)
*fruit strips--my only "packaged food" of the day
*sauteed onions, tomatoes, garlic and mushrooms--these were great with the chappattis.
*Aldi's fruit punch drink mix (happily does not have the disallowed dye)
*about 4 ounces of grilled chicken

For my healthy eating plan, I typically eat 1850 calories per day.  Today I ate 1178.  Yay for eating less of course because I am working on losing a lot of weight.  But what sucks is that I feel like I ate less.  I feel hungry and just "off".  Hopefully tomorrow will be a little easier for me.

My favorite foods for today:






Chapatti, chicken, sauteed veggie sandwich:

Operation Getting Healthy: Week 6

I had a really rough week with staying on track, both with emotional eating and making healthy choices while eating out. I was also only able to get to the gym one time, but I was really pleased to see that I was able to swim laps for 1/2 an hour before I got tired. The emotional eating has been hard while I'm dealing with the fact that my cancer might be back. It's my first impulse to go to ice cream or pizza when I'm sad or worried. I'm also really missing my Dad which is making it hard to be good about not emotional eating. Having made this progress though, I do not want to slip up and lose ground.

On Monday I will start the low iodine diet and hypothyroid mess I need to go through for the cancer stuff. It's not that unhealthy things are really allowed on the diet because I can't have dairy or bread that I don't make myself. Those are the places where I'd have a hard time. But being hypothyroid will mean that I'm tired and won't want to work out as much. It will also mean that my body isn't really burning calories. So that will be a challenge. I'm going to have to really focus on my commitment to working out. I plan on going on Tuesdays & Thursdays for sure and one weekend day.


Weight lost: 18.9 pounds!

It's my birthday

The gift that having cancer has given me is that instead of dreading becoming another year older, I appreciate the chance. Happy 34 to me today!

Timing in the Thyroidland game

Some people say that timing is everything. Life is about "being in the right place at the right time" or the "wrong place at the wrong time". I have learned over the past year how precious time is. How easily it can be taken for granted and how we never know when the time is up, when we've run out of time with someone that we love.

The past 10 months have had a lot to do with timing for me.  It's been a running tab of time.  How long was it since I last hugged my Dad?  How many days were left of school?  How many days until I graduated?  How many days will I have to wait for those results or that appointment? There were times when the days dragged on and times where the days went by too fast.  Times where I felt that that the passing of time was healing.  Times where I have reflected to how different things are this year than they were on that same day last year.  Things are very different this year, but in ways they are also the same. This time last year I was stuck in the waiting place.  I was waiting to find out how bad Dad's cancer was.  It was a difficult couple of weeks that I floated through, hoping for the best but knowing in my heart that the news wasn't going to be what I wanted to hear.

This year I find myself again in the waiting place.  I'm waiting to find out if my cancer has returned and moved into my lymph nodes in my neck. At each step of the diagnostics, I tell myself "this will be good news, and this will be the last step".  But then I move to the next step again.  It almost feels like playing a game of Candyland with my daughter.  Sort of like a Thyroidland board game. Just when I think that I have finally won the game, I get one of those silly face cards and I have to move backwards again. Or I wind up on the wrong square and I have to wait until someone draws a certain card before I can move again. Unlike in Candyland I could wind up at the castle or somewhere worse if I wind up having to take the fork in the road.

Time moves slowly in Thyroidland. There are diets to be followed, shots to suffer through, scans to hold still for and most importantly...news to wait to hear. Although I've been through steps 1 and 2 of the game, I still have many more to take before the castle at the end is in sight. Because you see, it's all about timing.  You can't have the scan without starving any possible thyroid cancer cells of iodine.  And then there's the shots which have to be given 2 days in a row.  And then there's bloodwork that needs to be drawn on certain days.  The radioactive pill to swallow.  And of course, the big enchilada...the scan. All timed out just so. Each a carefully planned square on the Thyroidland game board.  If you are lucky, you get to the end where a tasty iodine rich meal awaits you along with a phone call from your endocrinologist or oncologist telling you that it's all clear and you can get out of the waiting place and advance to the castle. 

The timing of this year's round of the Thyroidland game troubles me.  As I mentioned earlier, there is that saying that "timing is everything" which makes me think that the timing can be an omen.  A good omen quite often, but sometimes a bad omen.  You see this isn't the first October that I have spent playing this game. I very vividly recall my very first round in October 2005, the year that my cancer was diagnosed.  That year my steps in the game started in September and ended in January of 2006 with a round of radioactive iodine therapy or RAI.  This year feels so similar to that one.  At every turn, I told myself "this time it's going to be okay & this is the last step".  Yet I would get that call telling me to draw another card, advance one square...move on to the next step. Rather than a glowing sparkly castle at the end of that game what awaited me at the end was a different sort of glow....the kind that you can only get after swallowing a capsule containing a hefty dose of RAI. There the castle was an isolated room at the hospital where everything is covered in protective plastic to protect it from the patient. Nurses rush in and out because you, the patient are dangerous to them.  The big excitement is when the radiation techs come in and measure you with their equipment to see if you are still dangerous to the public. You sleep, not because you are waiting for the prince to come and give you a sweet wake up kiss.  But because you are so hypothyroid that you can't stay awake. It's a place where you miss your kids, your husband, and your dog. Oh how much better that gumdrop covered palace looked!

I really hope that this year I wind up with the castle rather than the hospital room.  I wish that I could say that there was a winning strategy to the Thyroidland game, but I don't know which cards I will draw.  I try not to believe that timing is everything and I stay hopeful. But really I don't know this turn will play out. I don't if the deck was shuffled or if it will be just like 2005.  I can only hope that I get to keep going in the game until I get to the happy ending.

Low iodine diet, here I come!

I just talked to my endocrinologist on the phone.  My lymph nodes are bigger than they have ever been.  The radiologist thinks they are benign from what she saw, but she cannot be sure without a tissue sample. So...

I will be doing the radioactive iodine uptake and scan.  Of course this comes with bonus sucky low iodine diet (LID) that I have to be on for 2 weeks to starve my cells for iodine. I asked if I can put it off a couple more weeks because childish as this may be, I do not want to be on the LID for our 9th anniversary and my 34th birthday.  After how horrible last year's anniversary & birthday were I really want this year to be awesome. 

If anything lights up on that scan to indicate thyroid tissue or my thyroglobulin blood test has a value other than undetectable, I will have surgery to remove the lymph nodes in my neck causing this trouble.  As my doctor reminded me, if the cancer is back it is slow growing so we have time to get it. It really does seem unlikely that it is, but then it was unlikely that when I was 29 that I was diagnosed with Stage III thyroid cancer at all....

I'm trying to stay positive.  I don't have a choice but to go through this so I can see the bright future that I have on the other side.

And now we wait....

I did my first step of the yearly cancer testing this morning which was an ultrasound of my neck. They were looking at my thyroid bed and the lymph nodes in my neck.  I am not at all worried that there would be tissue in my thyroid bed.  Because hey, it's been nearly 5 years since my 2 lobectomies that removed my thyroid.  (I had the first one in Oct. 2005 & the second in Nov. 2005).  But I am concerned about my lymph nodes because they have been suspicious in the past.  I have even had a biopsy of the lymph node closest to my carotid artery.  Let me tell you, that was not awesome.  It was painful and scary and I hope it never happens again.

So the radiologist like instantly had my scan to look at, but I probably won't hear anything until the end of the week from my endocrinologist. So now, it's time to wait. If anything looks out of place from the ultrasound, I will be doing the radioactive iodine uptake & scan in October. If not, there may never be RAI uptake & scan in my future again.

So either way, I have my low iodine cookbook ready....ready to use or ready to burn.

Update

My appointment with my endocrinologist went alright. She didn't feel anything in my neck.  I will be having an ultrasound of my neck and hopefully that will help to discover why I have trouble swallowing.  If anything is wrong, I'll be having a scan.  If not, I'll have thyrogen injections and a blood test.  Should be over by mid-October.

On the upside, my sweet husband took me out for a picnic lunch at the hospital. I love going there and watching the swans.